Online Groups Help Parents Weigh Tough Treatment Choices

Nancy, I'm so pleased at the clarity and accuracy of what you wrote.

For those who don't know the term, "e-patients" are patients (and families of course) who use the internet to participate in their health issues. The e stands for empowered, equipped, engaged and enabled. There's an e-patient blog http://e-patients.net for people who like to follow policy issues and discuss such things, and it has a great 124 page white paper for people who want to know more about the challenges of today's healthcare, which Nancy outlined terrifically.

I'm a member of ACOR's kidney cancer group. (I almost died of the disease two years ago; I'm all better now.) My group provided invaluable information; there's not a single "encyclopedia-style" web site that tells patients what they need to know about kidney cancer the way a patient community does. Nancy's exactly right: after the shock wears off, the question you face is "What are my options? What can I DO??" Patient communities can be a great addition to whatever the doctor suggests, including sometimes sharing options that the doc hasn't seen yet.

That last point can be a surprise, as Nancy says. But it's the information explosion. Donald Lindberg, head of the National Library of Medicine (which archives all the medical journals), said *years* ago that if he read two journal articles every night, at the end of a year he'd be 400 years behind. Who can keep up with all the new research? But patients who have a life at stake are very very motivated "specialists."

e-Patient Dave of NH 11:55AM May 29, 2009